One day at a time

TRACY - From the moment Nicole Rocha gave birth to her son, Brody, in April 2008, she knew something was wrong.

Keith Reid

TRACY - From the moment Nicole Rocha gave birth to her son, Brody, in April 2008, she knew something was wrong.

The bond between her and Brody wasn't forming.

"Brody wasn't responding to me," Rocha said. "He's my fourth child, and I could detect it, but I didn't know what it was."

Doctors thought they found an answer. Brody was failing basic hearing tests that infants must pass before they are discharged from the hospital, and they thought he was deaf.

But something in her bones told Rocha that Brody could hear, that he just didn't respond to the sound. A more intense round of testing at an Oakland children's hospital confirmed he could hear.

Still, something was wrong.

By the time Brody was 2, he still hadn't spoken. He didn't make eye contact. He had a tendency to run - but not like most toddlers do. When Brody runs, he bolts; away from somewhere and to something.

"You don't know why, or to where, and it's scary," Rocha said.

At 21/2, Rocha had pushed hard enough that her pediatrician referred her to the Valley Mountain Regional Center in Stockton.

After a specialist's screening, the doctor delivered his diagnosis: autism.

In that instant, everything changed.

Brody has the neurodevelopmental disorder known as autism, and the Rochas have become one family of thousands in the county, and millions across the globe, who are dedicating their lives to therapy and clinging to the hope that someday the causes of autism will be understood.

The diagnosis, Rocha said, brought an all encompassing wave of emotions, incoming medical paperwork, studies, second guessing, and therapy options.

She realized the life-long journey had just begun.

"It was very overwhelming, you know. It made me feel sad because he was having such a hard time communicating with us," Rocha said. "And then the next part that was sad, is we suddenly have to put our 21/2-year-old into school from 9 a.m. to 4 p.m. five days a week. We don't get what other people get ... to just let the kids be kids."

Autism is a developmental disorder that appears by age 3. It is usually characterized by impairment of the ability to form normal social relationships, struggles to communicate with others, and behavior patterns often exhibited by a preoccupation with repetitive activities.

Many autistic children do have seemingly innate abilities to do something - like being able to recall specific dates or rattle off the names of every U.S. president without hesitation.

But autism advocates continue to maintain that the disorder is largely misunderstood by the general public. For a growing number of people, accepting autism as an everyday part of life is unavoidable, since the numbers of people with it seem to be growing. Different studies show different numbers of those with autism, but they are all startlingly high numbers:

» One in 88 children are diagnosed with autism, according to a study by the U.S. Centers of Disease Control and Prevention. In 1975 it was 1 in 5,000.

» But, the CDC reports, one in 50 school-age children is diagnosed with autism, since children in school are more likely to be diagnosed than those who are not yet in school.

» The number of people with autism in San Joaquin County has grown exponentially in the past 20 years. In 1992, Valley Mountain Regional Center handled 68 regional cases of autism. In 2012, that number grew to 2,304.

"We're getting to a point where everybody knows somebody with autism," said Tom Asner, executive director of Autism Speaks California chapter. "What we need is action."

Research on how and why autism is growing so rapidly varies and is, so far, inconclusive. What researchers know with certainty, however, is that early intervention can be the difference between children growing up to be dependent on their parents or independent and self-supporting.

"Getting diagnosed early is key," said Tara Sizemore-Hester, an autism specialist at Valley Mountain, the region's main source of autism services for children ages 0 to 3 years and where many local families find out their children have autism.

"If you get in there early and help these kids catch up, they can enter school with little or no aid. That's huge."

Sizemore-Hester or another staff member will assign therapy and intervention services. The education plans are individualized, because no two people with autism are alike.

Recent laws have also allowed for people to pay for autism services through private insurance. That means Kaiser Permanente and Sutter Health can provide many of the services that a regional center or school district can.

There are some specialized schools, such as The Kendall School of Therapeutic Pathways in Tracy, where Brody attends. Valley Mountain can also provide in-home speech therapy and other lessons to help families teach eye contact, and how to introduce academic lessons in a productive way.

Children who go to Kendall receive up to 40 hours of one-on-one instruction per week with a goal of a smooth transition into kindergarten.

Brody, for example, will play a game of Chutes and Ladders with his aide as part of his lesson. The goal might be to teach him to know the right time to take his turn. Counting spaces helps with math. Keeping Brody from running off is a major coup.

After age 3, autism services are shifted to neighborhood school districts if the children are not already enrolled in a pre-kindergarten class such as Kendall. Public schools are federally mandated to provide individual education plans for every enrolled student who has a disability.

The biggest challenge for districts is cost and handling the increasing demand.

Any one student might need services from a speech therapist, a psychologist, and a one-on-one aide. Transportation is also mandated.

Lodi Unified reports that autism services can cost up to $30,000 a year if the district needs to send the student to a non-public school for specialized services. But the state doesn't give additional funding for students with disabilities.

Average daily attendance money is roughly $5,200 per student in California. School districts receive some federal special education funding, but budget gaps must be filled from general funds.

Every school district operates in slightly different ways. Stockton Unified, the county's largest district, handled an autism case load of 350 students this past year, Special Education director Thomas Anderson said.

"Special education can cost two to three times as much over their educational career" as general education, Anderson said. "It's difficult to put an amount on to it because some children with autism are in the mainstream and it's not that much more. Some need extensive services that can cost more money."

Stockton Unified is also one of the first districts in the county to introduce an intense intervention model with mild, moderate and severe classrooms.

Marshall Elementary has a preschool program, nicknamed "ladybug program," for children younger than 5, and Payton and Bush elementaries work with children in kindergarten through the sixth grade.

The classrooms are staffed with special education teachers and aides. Classes for children with mild symptoms are modeled very closely to a mainstream classroom but with a sharper focus on each child's individual needs.

The one-on-one intensity ratchets up in moderate classrooms, and even more for severely affected students. Teachers are trained to provide students with visual schedules. Most children with autism understand pictures better than words, so a photo of a child eating is the best way to announce it's lunch time.

Technology such as iPads and computers are also helpful tools for teaching children with autism.

"The goal is to mainstream the students," Anderson said. "And, we do have programs at all of our schools where children with autism are in mainstream classrooms with aides. We think this new (mild, moderate and severe classroom) model is a great system."

Services are federally mandated through high school, which for special education ends at the age of 22.

In Lodi Unified, McNair High has a self-contained autism class for those with severe forms of the disorder or who have autism combined with other developmental disabilities. There, teacher Amanda Quinn tries to teach both academic and life skills.

In a recent lesson, for example, Quinn helped her class of seven students bake a loaf of banana bread from scratch. She and her aides helped each student perform different parts of the baking process.

One student flaps his hand - a common sign of autism - while another makes loud noises.

The students get along fine as they work together. This group isn't headed for college. They will be dependent on other people forever.

Communication and normal responses remain difficult for Brody, now 5.

He's not deaf, as doctors once feared, but he has still never passed a basic hearing test, his mother said.

Yet, he is progressing at his school in Tracy. He's learning about taking his turn. His bolts are less frantic and less often.

"It's gotten to the point where we are going to take our first vacation with him," Nicole Rocha said. "We're going to Disneyland. We've never done that before, but because of all the help we've gotten, we think we can do that now."